New Member

[alsfarmerlaw]

Diagnosed with ALS in August, signing up for more clinical trials than I can possibly attend. I'm told by a very experienced neurologist that Radicava works in conjunction with an early diagnosis, but is useless in mid to late progression. What is the experience among this forum?

 

[lgelb]

A sad welcome, farmer. You might want to have a look at this thread, including the linked document.

Best,
Laurie

 

[KarenNWendyn]

Sorry to welcome you here, but welcome. This is a good group of supportive people with much information contained within the threads.

This was a long-running Radicava thread we had from a couple years ago: Have you started Radicava? Use this thread to discuss experiences with receiving radi

Basically, if you get it started early and meet criteria of FVC > 80%, there’s some data showing a modest slowing of progression measured by ALS functional rating score. It many work synergistically with Riluzole, meaning that if PALS are started on both early in their course, they might get more slowing of disease progression.

 

[alsfarmerlaw]

Thank you Karen, I see where you have provided very helpful information to this group for many years!